- May 8, 2019
- Living with Cancer Blog
By Ian Robinson
“What is not useful?”
After Alex Trebek announced that he’s got Stage IV pancreatic cancer, I admired his panache in the face of what is truly an awful time in his life.
Grace. Calm. Courage.
When a celebrity announces they’re fighting cancer, it can be a wonderful opportunity for education. Trebek can reach more people in a minute than those of us blogging for Wellspring can in a lifetime.
But the story and the responses to it reinforced for me the need to reboot the language we use around cancer.
One response to Trebek’s illness is from a woman who had a similar diagnosis and got better. This makes her a successful fugitive from the law of averages. She wrote: “Guess what? I beat the crap out of Stage IV pancreatic cancer … So, Alex Trebek, go kick cancer’s butt. It has no chance against you!”
It reminded me very much of an email I got right after I was diagnosed. “Poor cancer: Does it have any idea who it’s fucking with?”
I laughed, of course. It was funny. And it was a compliment that the person thought I’d be a warrior rather than a wimp in this situation. And I understand the overwhelming need to experience agency in a situation so horrible.
But.
I have a Stage IV cancer. You know what my major contribution to the battle against cancer has been? Sitting still while really smart people — nurses in the Tom Baker chemo suites, the incredible Dr. A, Nurse Kathy — do stuff I can’t even pronounce.
Sometimes I say, “Ouch!” because there’s an injection I get into my belly fat every three months that feels like liquid napalm. Sometimes I say, “This drug makes me tired.” I take the drugs they give me more or less on schedule. I refrain from consulting Dr. Google so my emotional state remains stable instead of being constantly in a state of misinformation freakout. Mostly I say, “Thank-you” to the high quality caregivers who bless my life with their presence and I do what they tell me. I spend a lot of energy trying to make them laugh because they’ve got a job I can’t even imagine performing.
That’s my entire contribution right there — sitting still, being obedient and working on the punchline.
Frankly, when it comes to being a patient, a relatively well-trained chocolate labrador retriever could sub in for me, no problem.
Do I craft the right chemo for my cancer?
Nope.
Am I wearing a white lab coat and dedicating my life to killing cancer in a lab?
Not even a little bit.
Did I go to school to learn how to run all those machines that go beep and ping and clunkety-clunk-clunkety?
Nyet.
While really smart people are doing all those things, I’m home watching South Park.
Because I’m not the warrior in this scenario. I am the battlefield.
It seems true a good attitude can help with survival rates.
And those much-quoted five-year survival rates aren’t something that should generate despair when, even in my case and Trebek’s, they’re scary.
They’re statistics and where you land depends on how good your health was at diagnosis, your age, the jurisdiction in which you’re treated. And because it’s a longitudinal measure, it includes treatments that may well have been overtaken by new developments. So … with luck, you can land on the right side of that curve.
But the language around cancer implies that if someone like me is only sufficiently cheerful, sufficiently filled with positive thinking, my cancer-rotted prostate will not kill me. Which is essentially victim blaming and shaming. And you know what? Me and my brothers and sisters already have enough crap to wade through without adding blame and shame, thank you very much.
And, by the way, it’s not like I’m miserable. I move through the world in an ecstasy of gratitude. That’s just part of living my best, albeit truncated, life. But if laughter cured cancer, I’d live to be a hundred.
But it’s not useful for the culture to state and restate what to me is essentially a wrong-headed way of thinking — that attitude can change the course of our disease.
It’s not fair to Trebek and it’s not fair to the rest of us.
Am I wrong about the whole positivity thing? Am I wrong to say we aren’t cancer fighters, we’re merely the battlefield? Am I just a spiritually bankrupt grumpasaurus? Lemme know what you’re thinking by commenting on the Wellspring blog or by emailing me at ianthesunguy@gmail.com
And remember … get the PSA test gentlemen. It won’t stop you from getting cancer but it may well keep you out of the worst club you could think about joining … The Stage IV Incurables.
One Response
Great article again Ian. You made me think about the warrior thing and whether I was on the front line or shaking in a foxhole hoping the tank would keep moving and leave me be. From my GP’s office I passively drifted to meet my oncologist, already shell shocked. But there I did make a choice to “take up arms” and in a small way make a contribution to science and maybe my own recovery. Okay, it was the other way around, but I signed-up for a clinical trial. I joined the fight. And I am glad.
F…Cancer